Ooops, got posted twice so I’ve deleted 2nd copy!
Hi all
diepcat love your thoughts on all this ‘stuff’, and re. comparing the male anatomy, I think it is instructive to consider how we - and they - would feel if they had their penis amputated, never mind about testicles, or prostate gland (removal of which can likely leave them impotent and incontinent; and all devastating, I agree). Because I think to a man his penis is so much his ‘manhood’ and his masculinity, but also, obviously, the physical pleasure as well - and while a doctor would say the penis does not compare with breasts, anatomically, rather obviously, it does compare in the what it means in terms of sense of self, sense of sexuality, and sexual pleasure. Which is one reason why those idiotically coy leaflets about ‘sex and intimacy’ are looking in the wrong place when page 1 starts with a diagram of the female genitalia. Derrrh, like haven’t they ever had sex? It is denial, bigtime, in which we are meant gratefully to collude.
Also - so right that we are all in different places, and it is interesting (interesting? hardly the right word…) that if affects us all in slightly different ways - but all in the same way in that our sex life is - temporarily I hope - scuppered. Temporarily? for me it has been far too long…
And how would I feel if I met a man in that unfortunate predicament? It does happen. Well - obviously, I’d be thinking about my - my - sex life, how could I not? So hardly surprising they are thinking about theirs. Love finds a way, sometimes, but there are no guarantees…the sex would be what I am calling ‘disabled sex’ - when you’ve lost important - vitally important - bodyparts, sex just ain’t gonna be the same; you might manage to get your rocks off together, but it is gonna be different, and ‘different’ probably means less good. But perhaps better than nothing. I have been in the nothing stage long enough to think ‘something’ would be better. I just gon’t know if it can be ‘good enough’. Without what I miss so much…
And my partner has been totally decent through all this; he says “you do what you can with what you’ve got” - and he isn’t the kind to quit when things get tough. I just lost all feeling for him. Strange the different ways it takes us all sinn’t it.
Hardly surprising either, that they are frightened of losing us and therefore steeling themselves - I believe children also do that -which estranges all your loved ones from you, because they have to protect themselves from pain while trying to remain loyal to you and help you - it puts a terrible strain on everyone, but it isolates us (hence the forum)from those who love us. And this goes on, after treatment, and on…and these things should be recognized as part of the ‘risks’ beforehand and the emotional fallout after which should be openly acknowledge and supported.
sno
Hi. Hope it’s OK to butt in here. I’ve not seen many partners posting in these forums (and the families & partners forum seems very quiet), so I hope I’m not treading where I shouldn’t.
I was reading some of the posts in this thread, particularly about the relationship and communication aspects, and could cry if I weren’t a big strong man (yeah…right!). So, I want to say some things from a man’s perspective. Please don’t be too angry with me, I know all relationships are different and all that, but this is me.
It’s early days for us yet. My wife had her left mastectomy only a few days ago and we do not even have the pathology results yet, so I don’t know what is to come, but I will try to make it work whatever happens and however she feels. The fact is that I loved my wife’s boobs, both to play with and to look at, and I won’t deny it is a great loss to me as well as to her. But despite the fact that it’s a cliche and maybe annoying, she was/is not just a pair of boobs. She is every bit a gorgeous, sexy woman, boobs or not (and I really am not just saying that), and I think it is part of my job to help her feel that and believe it - I do!
We haven’t got to the stage where we will find out how we really feel about the physical stuff, but I have every intention that I will be with her as she really is, not a disguised illusion (though the fun, sexy outfits thing does sound rather good - can’t wait for that!). As soon as she is comfortable (physically as well as emotionally) I want to caress her wound and kiss it, and get used to it, because it is part of her now. (Yes, I remember the scene with the stretch marks in Shirley Valentine - but I really do mean it.)
As far as the commitment and self-protection thing is concerned, I did sometimes think, even before the BC, that by committing to loving her totally, I might be setting myself up for enormous pain should anything ever happen to her. Well, it may be happening now, and whilst I am certainly scared, whatever pain may be to come will be worth it for having this feeling of utter love and being loved. The alternative would be just to avoid really living, which seems pointless. If it turns out that the time we have left is shorter than we thought, then I need to love her even more intensely now, not less. I really do hope your partners can come round to that way of thinking.
I think the penis comparison is a bit harsh. Losing that would make sexual gratification a physical impossibility for a man, not an impaired ability, so please try not to think in those terms. The leaflets are trying to deal with something that is really hard to deal with, as you know, so it’s hard for them to get it all right.
I can see this is really hard, and I do hope it won’t be this hard for us, but thank you for helping me to start understanding it now before it becomes a problem for us.
Hi Jansman
Firstly, I’m so sorry about your wife and wish her every success for a good recovery.
Secondly, welcome! I’m so pleased you ‘dropped in’. You and your wife are obviously in a very strong happy relationship with both of you wanting to go forward together with this and with your attitude and the love you intend to give your wife, you will make an enormous difference to her and I truly wish you 100% (and then some!) success.
As for the body ‘comparisons’, please don’t think we’re a bunch of man-haters or bitter at men in general or that we’re having a go at men. Also keep in mind that quite a few of us have some dark, mischevious humour which isn’t always meant to wound …! Obviously a man’s penis is the ‘be all & end all’ of his performance but don’t underestimate breasts when it comes to the effects on ours! Unfortunately, if a woman has/does enjoy her breasts, the effects they have, all the good stuff, then if she loses them and cannot ‘get back’ to feeling sexy without them, then sex won’t happen anyway!! Yes, we’re more than boobs and we know it but they are a huge part of being a sexual woman, whether we like it or not.
I think it’s excellent that you’ve taken the time to have a look through the postings here and yes, I guess it is a bit of an education. If you read closely, you’ll find that the women here aren’t bitter ‘haters’, we all come on here to support and let of steam and, most importantly, try to heal. A lot of women were loved, just as you loved your wife and would give anything to have that back, the pain of losing a deep love is crushing, especially when it’s due to BC. It’s so refreshing to know there are partners out there like you who will help their partners (and be helped themselves in return) to heal.
Won’t ramble on for now as I’m sure you’ll have a few replies. Wish there were a few more single men out there with your attitude …!
Sno - I so agree with you where say “… the emotional fallout after which should be openly acknowledged and supported”
Good luck & lots of love to everyone. xx
Hi Jansman
I think hearing a mans perspective is a good idea. My OH is very similar to the way you are thinking. I’m now 1 year post treatment. I had some post op complications with my wound and did feel a bit funny about him massaging the area. I had to pluck up the courage to allow him to have a good look at it. It was really tough but I am glad we did it. I know it was hard for him as well as he cried a few times when he touched the scar. I think on my part it was about letting go of a lot if hangups and I know that some people cannot do this. My advice would be to maintain good communication and assure her that you still fancy her like mad.
One point my OH did admit to was the lonliness he felt during my treatment. When I wasn’t in hospital I was either in bed resting or sleeping on the couch. Also well meaning people would visit and the centre of attention was alway me. Even I felt bad because no-one except for me and the nursing staff asked him how he was coping. I may have been going through the treatment but he had to live with it. This why I can understand why men find it hard to cope with BC.
I hope you and your wife all the very best
Lila
Thank you both Diepcat and Lila07.
Don’t worry Diepcat, I don’t think you are haters at all, and we also are using some black humour to help us through this - especially my wife. I hope there is someone out there for you, many of us are not as shallow as you might think. (I’m sure you know that anyway.)
Lila07, I am so pleased that you OH is very supportive. I think it also helps him if you allow him to be supportive; even in this horrible situation, there is huge pleasure to be gained from helping and supporting the one you love. I changed the dressing around my wife’s drain last night because it was coming off and, whilst it was a bit scary, I felt so pleased that I was able to do it for her.
I can understand the loneliness thing, but it is not so bad for me. I am lucky in that we have many friends who treat us as a couple and understand that we are both going through this together, so that is great. I am also sending daily SMS “bulletins” to lots of close friends and getting loads of nice replies. It’s amazing how comforting that is, and how wonderful they are with me as well as with her. Also, I write a blog which, even if nobody reads it, is a great help for me in sorting out my feelings.
The only time I was really lonely was in the hospital. They are fantastic with my wife, and the people in the breast unit itself have been pretty good with me as well, but the system as a whole doesn’t seem to recognize partners at all. There are staff, patients and visitors, and everyone seems to be in one of those three categories. But the friends were there on the end of the phone network and I also read a lot of these forums, which helped a lot even on that awful day of her operation.
Love to all, and I hope you all find happiness.
Jansman - welcome, and don’t go - it is so wonderful to have a man’s perspective here too. You are a thoroughly decent human being - and I hope and pray things go well for you both, you sound like a together couple, and soul mates.
I would agree with diepcat about the breasts though - the point I really do think needs to be understood, and which is obvious when you think about it, is - yes for sure a man can’t perform without his penis, but without breasts for a woman then it’s straight in for the kill, if you’ll pardon me, which is unsatisfying for both. There’s no point getting to the end without going from the beginning, and as far as I’m concerned too much is missing, it just don’t work for me any more. And they tell you to focus on other erogenous zones, as though they were ‘back-up’ just waiting for a moment like this, but mine weren’t, they were already in use, there are only so many places on a human body, so it is a net loss, and I have to say, of the major one. I’m not saying the comparison is total, but I do think there is something useful about that one as against comparing with other male bits, for seeing what it means to us.
But you jansman are fantastic in being totally supportive and loving, and I have to say my own partner has been too, but I don’t know how, it has just gone from me. Shock has a lot to do with it in my case, but I think maybe we have other issues. Which I didn’t realize before. So you can’t predict the way it is going to affect you - but you are doing everything right, and I hope everyone around you continues to support you as well so you can continue supporting your wife.
very best of wishes, sno
Hi Sno,
Thank you for the welcome and the good wishes.
I think I understand. To use a typically male-oriented metaphor, its really doesn’t help that the engine is in good working order if the starter motor is gone and the battery isn’t holding a charge properly. (Sorry if that is a really crass analogy - no offence intended.)
I hope we don’t have these problems, but if we do, it really is up to me to find a way. I think most of us tend to go through life muddling through where sex is concerned. I already tried to learn what I could even before all this, but I intend to enjoy becoming an absolute expert; I think there is good information out there if you can find it. It’s a pity everyone is so embarrassed about sharing the intimate details; perhaps I will try to do that as we move forward (anonymously, of course).
By the way, I am not really anything special. It’s just that she makes it so easy for me to love her.
Hey All
Lots of interesting stuff on here! Think Sno has a valid point about shock, but also sadness and anger at what has happened to our bodies. And in a way, we go back to my original point which is that, if there is love in a relationship it does help. However, Sno is also right in that none of us know how it will be till we are in the situation and it is possible that if a woman holds back a bit her man will feel rejected and all the good intentions somehow become lost and confused in the void. So really, it is about vulnerability too.
So do i accept the dinner invitation for tomorrow or not???
Love to all
Jane x
Hi all
Love the analogy jansman, that about sums it up!
It has been a problem for me, but if you trawl through these threads you will find women who have been frightend for their sex lives and then found that it is okay for them, they find they are happy - and I am not talking about the ones who say they just perform to keep their husband happy, which I’m not into, I mean ones who genuinely seem to have come out the other side and it is okay for them. I wish…
So please don’t think it has to be this way - you may not have these problems, and as you say, you will work at it in whatever way you can. Which brings me back to coy leaflets and stuff, about which I have already said what I think! You are doing all you can, she is a lucky lady, though of course I am sure she deserves to have you…
Jane - definitely accept the dinner invitation - well you must have by now - nothing ventured, nothing gained. And be encouraged by our new gentleman on here, there are decent men out there, just hope your mysterious stranger is one of them - we have to give them a chance to be - and if he turns out not to be, refer him to me and I’ll personally provide him with an opportunity to reflect on the meaning of having his body rearranged for him. It is very daunting, and like you say, about vulnerability - but the alternative is to stay at home, and resign yourself to celibacy. Take up tiddlywinks. Join the nunnery. It can’t be that that is all that’s left for us. It just cannot be.
love, sno
Hi Jansman
Just a quick note to say that both myself and my OH got a book called The Breast Cancer Husband. Some of it was a bit OTT, its an American based book on a man whose wife went through BC. It did however, provide some help for my OH to support me. Some things written in it were quite amusing and did apply to our situation.
Lila
Hi Sno, Thank you for the reassurance. I am quite confident that we will be OK as far as the Mx is concerned, though I’m not being complacent. I do worry about what the chemo will do to her, though. I agree about the “just to keep him happy” thing; I don’t know whether women realize it, but as a man, on a scale of 1 to 10, I would rate “being kept happy” as no more than about 6 (for me), whilst full mutual satisfaction, with my loved one, would be 10.
Lila, thanks for the book reference. I will look it up.
I found that, as a partner, reading this site as well as the comments was quite educational: everydayhealth.com/blog/breast-cancer-second-time-around/does-your-sex-life-suffer-after-breast-cancer/
I’ve been away from internet connection again for a bit - and I think it’s brilliant that a man has posted here. I must say I feel a bit envious of Jan at this moment! Although - since I last posted - things have really improved - still baby steps - but we did actually manage to have some fairly decent S*X for the first time in about 2 years - so that is something. The fact I immediately got an attack of cystitis is not so good - but I guess my body went into shock! We have also been talking more - and one night he drank a whole bottle of wine (I was not drinking) and managed to say ‘It’s good to talk…’ which I guess means he feels more understood - more listened to - which is what he needed. I love what Jan’s man said and maybe my husband also feels or felt like this - but it’s a long road - as others have said - and the chemo etc is pretty horrendous - and shocking. I do realise how hard it is for those who love us - and that its not just all about me - I really do - but maybe I hadn’t realised the depth of their fear. Another mad thing is that my hair which is still tight curls from chemo and grey - has now been dyed and straightened and weirdly seems to have made more of a difference on the fancyometer than the boob problem. I do look more like my old self - and feel better - younger and more like the old me. Now just need to lose the 2 stone that mysteriously appeared overnight and we’ll be laughing…well perhaps not quite. Anyway - we are all at different stages - but it has occurred to me that all of it is useful - and it shows that if nothing else - life changes - nothing stays the same. I’m glad I forced the issue with my husband - and I’m glad I expressed some of the pain and feelings of rejection here as it has helped me to move on to another stage - a long way from being out of the woods - but feel as if we are perhaps on another, brighter track. Will definitely be looking at the sex shops with renewed interest Lila - loved that - but may need to work on all these damned menopausal symptoms before I encourage too much activity!!
Anyway - I really appreciate all these posts - it has helped me so much.
Hi everyone,
I am another newie keeping this thread alive and proving what a big issue this particular subject is. I have just spent a couple of hours totally engrossed in reading all the postings on this thread.
A lot of the stuff I have read re mourning the loss of part of my body/loss of libido/ not being the same person as i was is exactly how I feel! It is quite spooky but comforting to know I am not alone in feeling like this.
Originally dx Feb 06 I am now 3 years post mx surgery/chemo and had tissue expander inserted Dec 08 and I seem to have gone down hill just this last 6 months since recon!
My partner has been fantastic since beginning and we coped right through treatment (he was one of those who kissed my scar and accepted it as the new me straight away and never made me feel freaky or disfigured - he just loved me even more so than before). We got straight back into a different but fairly normal relationship post op… just glad to be here and all that… both mourning the loss of a well loved boob.
However, I dont think I ever dealt with it seriously enough in the beginning and it is only since having recon through tissue expander that it really seems to have hit home that I REALLY DO miss what I had before. I have had a really busy three years since dx (extension, new job, being there for kids, etc) which made me push all things BC to the back of my mind and repress feelings I was having. Eventually though it comes back and bites you on the rear! You do have to go through some kind of grieving process and this is happening to me now. I hope that I can get over it but am not sure if I will. I have found myself pushing away that fantastic man who has been there right beside me throughout because of my loss of libido and now we have a rift between us that was put there by me and I find myself not really caring anymore whether we make it or not as i feel so numb! It is so sad.
We are trying to keep talking though but I am struggling on trying to get back what I have lost - I miss who I was and want the old me back.
Reading this thread has helped me realise that only I can change how I feel about my situation and I feel hopeful that I can find the strength to eventually come to terms with the loss of a breast and all that goes with it and get some kind of closure and move on with a man who loves me very much.
I wish everyone who as posted on this thread all the very best.
Hi Lyndamac
Welcome - wow what an honest, touching post! Sadly, there are situations like these where people who have gone through loss and bereavement immediately try and ‘fix’ it or ‘move on’ with all the very best intentions, ie, only thinking ‘positive’ and refusing to accept any negativity, almost in denial that this will effect them or their relationship adversely. Sometimes this pays off but there is the risk of, as you beautifully illustrate, the issue coming back to ‘bite you on the bum’ big time! The best advice I had was, ‘with grief, you can’t go over it, round it or under it, you have to go through it’ and you can have all the support in the world but you, yourself have to be in a position to accept this and only then can you really start to ‘move on’. That doesn’t mean you walk around ‘woe is me’ all the time, but you accept and acknowledge the negativity, (perhaps offload a load of ‘bile and venom’ & all the dark thoughts to those that know or understand you best, like the fab ladies on here for instance), and then let it pass as you continue on your recovery ‘path’. (Wish you & your partner all the best Lyndamac).
This is just me passing on my thoughts, not trying to ‘preach’ or ‘fix’, just wishing everyone, as always, lots of love and, of course, healing! OMG, I’ve turned into a hippie - ah well, I like hippies!! Lots of love. Cathy x
Hi Lyndamac,
Thank you for such an honest posting. You and your partner sound very much like my wife and myself. I honestly feel she is just as beautiful and sexy now as she was before, even with only one breast and her scar. The scar itself is taking a little time to get used to, but I know I am already learning to love it as part of her. My wife says that, apart from the pain she is having, she is OK with the loss of her breast (though she is of course sad about it). Your story is really helpful because, even though everyone is different, it makes me realize that I should not assume that she will always be OK with it.
In your posting, you didn’t say whether you have talked to your partner honestly about your feelings. I really hope that my wife will tell me if she has problems like this in the future. Like many women (or perhaps people), she does sometimes hold back her feelings and adopt a stoical approach to things, which I can imagine could develop into quite a barrier. I can also imagine that it might be quite hard not to get the feeling that she didn’t love me any more or that I had done something wrong. In that case, it would help me to get reassurance about that from her, and to be allowed to understand and support her and help her through such a difficult time.
It also occurs to me that, when you have both got used to your changed body, it is now changing again (albeit for good reasons), and perhaps you both have to handle those new changes now. For me, I will not mind whether my wife has a reconstruction or not (in fact I might prefer that she didn’t go through that, but time will tell), but I will support her absolutely if that is what she wants to do. If she does, though, I think we will have to support one another through that just as we are doing with the mastectomy.
Of course, I don’t really know what I am talking about but, whether these words are helpful or not, I really hope you are able to work through this stage and not lose the wonderful relationship that you both clearly have.
Hello Diepcat and Jansman
Well thank you both so much for your kind words and what quick responses! You are right Diepcat - things like this do help tremendously and yes, I was one of those who put on the smile, the brave face and was so strong - the more people tell you how strong you are the more strong you become (or feel you have to become might be more apt to say at this point!). I have become stronger though.
Jansman, in answer to your question about whether I have spoken with my partner honestly - yes I have, lots and lots and lots. I think though that everyone reaches a point where they have no more to say that’s new or different. We are just going over the same old ground (even I’m bored with myself now so he must be!)
My partner has admitted that despite what I have told him, he still feels neglected and he does have every right to say that because I am neglecting not just him but our relationship - my relationship - in general while I try sort this out in my own head. I have asked him to dip in and out of this thread next time he visits to see that others are going through exactly the same, he may even have something constructive to post on it, who knows.
What you said about your wife not being too worried (although sad) at the moment about the mx; I can only say that this is also exactly how I felt too in the beginning and my partner and I were not initially bothered about whether I had recon or not. He supported whatever I wanted but deep down just like you, I dont think he wanted me going through the pain of another op but he never said that directly to me.
However, it is summer when you feel it most because you have to be so careful what you wear, you cant wear anything too low cut and I am (was!!!) quite well endowed (32G/34E) and had to be careful what I wore as half of my chest was concave. Strappy dresses, V-necks and tops were out of the question. I went for a tissue expander (least invasive method) just to give me the illusion of a bit of fullness if I wear a V-neck and it does look great now although it isnt as big as my natural one so I still have to pad out my bra with a small prosthesis but it works for me. Recon will not make any woman feel like you have back what you lost though and this is something that all women should be aware of before considering recon. It is purely aesthetic (if that’s how you spell it!)
So there you have it… “returning to a sex life after recon” as this thread is called, has - if anything - been worse for me since recon because now I have a big hard numb lump on half of my chest that was just flat and numb before!!
On a more positive note though - I am determined that we will get through all this in tact - we have a nice romantic weekend planned with a balloon ride in Bakewell on 25th August and I am sooo looking forward to just getting away from it all with him despite everything. Sorry this is soooo long, hope you stayed awake long enough to read it!!! Take care.
Woman’s Hour on R4 of Thursday last week talked about sex in long term relationships - it’s a minefield of course and that’s without throwing BC and mutilation into the mix.
Worth looking for it on podcast or Listen Again.
As for canoes well I can only think that life has gone swimmingly for some because my canoe is upturned and the air running out and I think I have quite lost the ability to paddle!
Reg.
Hi Lyndamac. Thank you again for your honest insights. I do hope things go well for you both and that the holiday helps you to work through it. Underneath it all, you seem to have the same thing we have and it is so precious and worth holding on to.
Hi Regina. Thank you very much for the link to Woman’s Hour. I just listened to it and it is amazing! I already started to write a blog article about my own feeling on all of this, prompted by the discussion here, and many of the things I had already written were there in the Woman’s hour discussion! The blog article is really becoming more about relationships than just sex, and that was the way the discussion on Women’s Hour went. I also try to address what I think are some misunderstandings between male and female partners, and they also were right there in Woman’s Hour.
I would like to give you a paragraph from what I had written:
====================
So, how do I, as a man, really feel about sex? I did read somewhere that “women like sex because it leads to intimacy, whereas men like intimacy because it leads to sex”. I thought that was utter rubbish. The fact is that as a man, with a bit of effort and concentration, I can pretty much “get off” any time I want, just by using my imagination. I certainly wouldn’t need real intimacy with a woman to get there (though I suppose the memory of it would help). I think, though, that on a scale of 1 to 10, that would probably rank as a 3. I have never been with a prostitute, nor even had sex outside of a loving relationship (yes, some of us haven’t), but I imagine that would figure somewhat higher than “do-it-yourself”: perhaps a 5. Sex, when it focusses only on gratification for me, even with my loved one, probably rates as a 6 or maybe 7. On the other hand, making love with my wife, when we both enjoy it, ranks for me as a 10, so why is that? I am sure that the key is intimacy and sharing with the one I love above all others. The point is not that the intimacy leads to sex; it is that it is an integral part of it, and for me that’s the difference between “having sex” and “making love”.
I will try to finish the blog article now, though it is one that is taking time to edit, revise, etc. It’s such a difficult topic to talk about without being in fear of being misunderstood.
PS. Don’t tell anyone I listened to Woman’s Hour. It would totally destroy my street cred!
Jansman
Don’t worry about your street cred. You have cyber cred in spades!
Yes, the woman’s hour dicussion was good and I’d like to get the book.
Have you posted the URL to your blog? I might have missed it in my hormonal haze!
I don’t envy you your editing; it gets tough to know what to leave in/out without diluting what you are putting across. Also, there will always be someone who misunderstands through happenstance or just from having a blinkered view. You can only do your best to keep that to a minimum.
Reg.